Michelle is our youngest daughter, she has always been a happy active child, she is a big fan of GAA, she has always been involved in all activities. Suddenly we notice some slight pulsation (nerve spasm) in her left arm.
On 11th of November, we celebrated Michelle’s 10th birthday. The next day, the 12th of November she had her MRI and a few hours later the doctor rang, to meet us. We drove back to Tullamore hospital where he was waiting for us as it was near 5 in the evening. He showed us the MRI and explained what was there and referred us to Temple Street Hospital.
Michelle had been diagnosed with a rare tumour in her spinal cord called “Ganglioglioma”.
The neurosurgeons were giving us very small chances because the tumour started from 2nd vertebra till 7 vertebrae it was too close to the brain, they were saying after surgery she might never walk or having issues with breathing and she will need lung ventilation for the rest of her life. Our world had fallen apart.
On 24 of November in Temple Street children hospital Michelle had her surgery on her spine, they took her at 8 in the morning it was the longest day in our life, because we didn’t know how it would turn out for her.
At 20:15 Michelle’s surgeon calls us to tell us that surgery went successful and her left side arm and leg is weaker than right side, but it was a good sign that she was able to move it a little bit and her breathing functions didn’t change. It was such a relief for us, we were so happy and grateful to neurosurgeons and all the team for their brilliant job! That what they are doing it’s amazing, we will never forget them!
Michelle was in ICU for 3 nights, because she had issues with her blood pressure, but every hour she was getting stronger. She had to wear a halo on her head for 3 months to make her neck heal straight 4 pins in her skull made sure it wouldn’t move. Michelle had such pain in her body, neck, hands, legs she couldn’t move after surgery, but she found courage in herself to fight.
She made great progress in 4 months recovering. She had to learn how to walk again. And use cutlery. She’s still on recovery under occupation and physiotherapy. On the 18th of February, we got halo off and had our first MRI post-surgery, which showed some tissue in her spinal cord.
We were advised to do Proton therapy together with oral chemotherapy in Germany. Next Monday 12th April we are flying to Germany. It was a tough time for us since last year’s ups and downs, but thanks to all our family, friends, community with all their support has helped and given us strength to keep going we knew that we are not on our own. It gave us such a boost.
We cannot express how grateful we are to The Gavin Glynn Foundation to John and his team, for all help and advice. There was a time when we were so lost, but when we spoke with John, he was the bright light at the end of the tunnel, him and his team made our journey so easy and calm organised flights/accommodation living expenses and transport for our stay in Germany.
The Gavin Glynn foundation – the job they are doing is absolutely brilliant and amazing, thank you from the bottom of our hearts!